A story of waiting…waiting for that call to come…
Theo arrived on 21st July 2008 after an uncomplicated pregnancy and birth. Within a week he was dying, and at one week old was in PICU for viral Meningoencephalitis and Myocarditis. We initially took him to hospital suspecting dehydration as he had struggled to feed.
At first he was on a variety of heart supportive drugs for acute heart failure and to reduce seizures. He was chilled and sedated and then re-hydrated – my newborn a swollen marble white form attached to machines. Later he developed Chylothorax, needed bilateral chest drains and required TPN (Total Parental Nutrition) which forced his liver to fail. He needed an Atrial Septostomy but his veins were already so damaged from the central line access, the doctor had to use his portal vein which goes through the liver. He had multiple secondary infections and at ten weeks old was given a tracheostomy as it was clear he required long-term ventilator support. His heart had been totally ravaged by the virus and his own immature immune response had led to dilated cardiomyopathy, as well as a scarred and hypertrophic septum.
He remained in hospital until he was nine months old, tube fed and ventilated and returned to his family at home in the same state, requiring dozens of doses of medication and tracheostomy care meaning we were all slaves to the suction machines. Theo’s bedroom was the lounge so that the community carers who came to help were able to stay overnight. It was a horrible time.
Theo has had many admissions for complications from ordinary childhood illnesses, another episode of liver failure, kidney failure which needed dialysis, dehydration, several episodes of pneumonia, pulmonary edema, and random events like widespread petechial rashes and an acute reaction to penicillin. He has also had many operations and interventions, such as catheterisations, MRI’s, gastrostomy placement, and tracheostomy fistula repair when the trachy was removed after 2 years as well as having stem cell transplants and a portacath fitted. He has blood tests for something, on average once a month and I’m certain his blood group is part antibiotic part inotropes. He has always suffered from forceful vomiting and reflux, and has gastrointestinal bleeds. There is some discussion currently about inflammatory bowel disease.
At four and a half years old, on sight it is hard to believe Theo is even ill enough to need medication, let alone a heart transplant. He has always been such a cheerful, bouncy child, with pink cheeks and bright eyes. However he is on Captopril, Carvedilol, Aspirin, Digoxin, Furosemide, Spironolactone, Omeprazole, Domperidone and Sytron multiple times every day. He also remains tube fed as he has little appetite, energy or interest in real food.
Unfortunately we also discovered six months ago that the inter-atrial stent that allows the high pressure from the left atrium to decompress into his right atrium has resulted in the beginnings of pulmonary vascular disease; the very procedure which saved his life is now at risk of ruining his chances of survival. As a result, we have decided, with the recommendation of the team at Great Ormond Street Hospital, to put him on the transplant waiting list now. If we left it too late, Theo’s lungs may be irreversibly damaged and then he would be unsuitable for transplant. We daren’t let that happen. Not after the fight we’ve put up already. Not for the little boy who is so brave and beautiful.